Update from Keith: February 26th, 2008

Taylor is back in the hospital. A 103 degree fever led us to 24 hours in the Children's Hospital Emergency Room (beginning at 7 on Monday night) before she was finally able to get a bed upstairs (yes, we're back "home" on 4 west, the solid tumor wing of the cancer floor at Children's). Just to make the circle complete, we are back in the same crappy three-person room that Taylor was originally admitted into when she first came to Children's on January 22.

Taylor's most recent course of chemotherapy (which was administered last Tuesday night/Wednesday morning at midnight) has left her severely neutropenic. Doctors and nurses love tossing around terms like that (I've decided that it's a form of testing; they use their own (mostly ridiculous) vocabulary to see if they can treat you like a dolt. If you have to ask them what their terms mean, they know they can sneak anything past you; but if you use one of their words correctly they have to actually respond to your questions with real answers which, of course, incorporate new, multi-syllabic gibberish designed to pin down the extent (or lack thereof) of your understanding). To the rest of us, her neutropenia means that she has virtually no white blood cells and is unable to fight off infection on her own. Thus, having a fever (often a symptom of infection) means immediate courses of broad-spectrum antibiotics. And a trip to the emergency room.

Frankly, if neutropenia + fever were her only problems, things would be fine. Her fever has gone down steadily and she didn't really have one for most of today. She's had three courses of three different antibiotics and her blood cultures have come up clean so far. Her biggest problem, which we have been fighting a losing battle against for weeks now, is her inability to eat. She's wasting away.

She's lost about 25% of her body weight at this point. Conservatively, I would say that she has had no more than 1 meal per week (that's right, per week not per day) since she first arrived at the hospital and received a diagnosis. I'm not sure I can remember the last time she ate an actual meal.

Things turned worse this weekend. Her mouth hurts so much from the radiation that she can no longer talk. She communicates by grunting, although sometimes she tries to talk without moving her mouth, like a ventriloquist. We rarely understand what she is saying. The burn in her throat is so bad that she stopped swallowing even her own saliva yesterday. She now drools onto ever-rotating sets of towels that the nurses bring her.

We have tried everything over the last few weeks to get her to eat. But the agony in her mouth cannot be overcome by wishes or promises or love. It breaks my heart to watch her struggle to please us with a small sip of water when I now realize the searing pain she experiences.

We've given up on eating. Unbeknownst to us, her oncologist and radiation oncologist met on Monday to discuss her deteriorating situation and decided that she needs a GI tube to deliver nutrition. Kris and I had surrendered to its inevitability independently about the same time. The plan was to give it to her under anesthesia following today's (Tuesday's) radiation visit, but her emergency room visit and poor health canceled this morning's treatment. Now, the risk of infection may make that too difficult and she may have to have intravenous nutrition which carries with it its own problems. There are no simple solutions. Mostly, there's just problems.

I don't know how Taylor will take to the feeding tube. She's already experienced far more than any five year old should endure and there's much more yet to come.

I look back on those original timeless weeks in the hospital and I recall my naivete. I thought that getting home would somehow cure most of our problems. It has only made them worse. Now, I think that getting her through her radiation treatments and allowing some time for her mouth to heal will make all the difference. I wonder if it is just more naivete.

I'm not sure what the current criteria for her discharge from the hospital will be. At the very least, they would like to see her neutropenia diminish before getting home. That would probably mean coming home Friday or Saturday. I think, though, that the focus will quickly shift from her neutropenia to her nutrition which could keep us there far longer. As with all things cancer, there's no quick fix.


Dave K said...

K & K,

Keep it up!

Your fight will only make her stronger. We are all here behind you from the Kaub Family and will have you all (especially Taylor) in our prayers ALL THE TIME.

If there is anything we can do, anything you need, or anything more than prayer that will help let us know.

We are here for you!

Fight ON!

Dave Kaub and Family

nairie balian said...

A day does not go buy that we do not think of you and pray for you. Your frustration with the medical staff is so understandable. We cannot even begin to imagine your heartache. Please keep on fighting. IF there is anything we can do for you please e-mail us, let us know.
Nairie and Mike Balian

Melissa said...

Kris & Keith,

Having a child with neutropenia is our specialty, our daughter in 1st grade has gone through some of the same experiences as Taylor. Don't hesitate to call/email if you want to discuss any facet of this.

Your courage is inspirational,
Melissa & Tom Tighe